The elephant in the room: critical reflections on mortality rates among individuals with Parkinson’s disease

Abstract

In our efforts to create more public awareness about Parkinson's disease, we often emphasize the tremendous impact of this common disease on an individual's life. However, in public awareness campaigns, we largely avoid discussions on the survival of people with Parkinson's disease (PwP). Many clinicians even state that the survival with Parkinson's disease is close to normal. In this article, we contemplate on findings regarding the mortality of Parkinson's disease in order to spark a discussion about what information we should provide to affected individuals and their near ones about the life expectancy of PwP. Our narrative review of the evidence indicates that although the survival of PwP has improved over time, PwP still live fewer years than their age-and sexmatched population comparators, albeit at older ages this difference can be small. We feel that it is important to emphasize this information towards PwP, the general public, policymakers and funding bodies. We hope that this will help to create a better understanding of the enormous impact that this disorder can have on affected individuals, even beyond the disability that is experienced during life.

Parkinson's disease: Still waiting for a cure

“…It has been a long 9 years since my FDA patient testimony. Over this time, the Parkinson's Tribe and I have been “patiently” waiting and my still optimistic cheering personality has been tempered by seeing many of my own PD friends pass away from complications of a disease that was supposedly billed as “one that you would not die from.” 10 My own Parkinson's has markedly progressed, and many of the symptoms that were once merely nuisance symptoms have advanced to the point where they are debilitating and impact my activities of daily living.…”